Centre for Human Genetics, Biotech Park, Bengaluru, India.
Indira Gandhi Institute of Child Health, Bengaluru, India.
J Genet Couns. 2021 Oct;30(5):1224-1232. doi: 10.1002/jgc4.1517. Epub 2021 Oct 1.
Because of the lockdowns and restrictions placed on non-emergency medical services due to the COVID-19 pandemic, we were prompted to set up telegenetic services for patients and families with genetic disorders. Genetic medicine poses special challenges because the unit of consultation and counseling is often the family and not just the individual. We describe here our experience over eight months in 2020 in evaluating 539 families with genetic disorders on a virtual platform. Patients from urban and rural districts of Karnataka and neighboring states received telegenetic consultation. Families were phoned by genetic counselors 14-28 days after the initial consultation to measure feedback. One member of each family was invited to complete a modified 9-item Telehealth Satisfaction Scale (TeSS scale). Of 293 respondents, approximately 87.3% reported satisfaction with the visual and audio quality of online contact and 86.7% on saving travel time and expenses. A shorter waiting time for appointments as compared to in-person appointments in the previous year was seen in approximately 90%. Nearly 87% reported satisfaction with online genetic consultation; however, 74% of these indicated a preference for a face-to-face appointment. The reasons for this included a cultural perception of confidence instilled by meeting medical specialists in person. Telegenetics presents unusual advantages in India because of the high usage of smartphones, unlimited Internet data as a feature of most Internet plans, free web-based video applications, and digital payments. We suggest that telegenetics may be an alternative in providing a hybrid model of care in non-emergency situations especially where resources are limited.
由于 COVID-19 大流行对非紧急医疗服务的封锁和限制，我们被迫为遗传疾病患者和家庭设立远程遗传服务。遗传医学带来了特殊的挑战，因为咨询和咨询的单位通常是家庭，而不仅仅是个人。我们在这里描述了我们在 2020 年 8 个月的时间里在虚拟平台上评估 539 个遗传疾病家庭的经验。来自卡纳塔克邦和邻近邦的城市和农村地区的患者接受了远程遗传咨询。遗传咨询师在初次咨询后 14-28 天给每个家庭打电话，以衡量反馈。每个家庭邀请一名成员填写一份经过修改的 9 项远程医疗满意度量表（TeSS 量表）。在 293 名受访者中，约 87.3%报告对在线联系的视觉和音频质量满意，86.7%报告节省了旅行时间和费用。大约 90%的人认为与去年相比，预约等待时间缩短了。近 87%的人对在线遗传咨询表示满意；然而，其中 74%的人表示更喜欢面对面预约。出现这种情况的原因包括亲自与医学专家会面所带来的文化上的信任感。远程遗传学在印度具有独特的优势，因为智能手机的使用率很高，大多数互联网计划都具有无限的数据，免费的基于网络的视频应用程序和数字支付。我们建议，在资源有限的情况下，远程遗传学可能是提供非紧急情况下混合护理模式的一种替代方法。
